Our beautiful, gorgeous little girl, Anna, has leukaemia. She was diagnosed on Monday 5 December 2011.

Anna is much, much better.
Her blood counts are up, she is coughing less, her temperature has remained below 37 degrees for over 2 days.

More importantly she is laughing, smiling, playing, standing on her standing frame, wearing her new splints (with new Disney princess socks on both hands and feet!), eating, drinking and generally just being herself.

It’s been a very difficult and scary couple of weeks but Anna has come through it.

It looks like we will go home tomorrow.

Thank you so much. For your prayers, for helping with Nathan and for looking after me. X

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Anna was due to go to theatre under general anaesthetic on Wednesday. She had a bad cough and a temperature, both good reasons not to go sooner. However, she is not improving and her temperature remains worryingly high so the need to try and find the cause of this infection is urgent. She is also finding breathing hard work and requiring additional oxygen on a regular basis.

So yesterday (Monday) she went first for anther CT scan, and then late in the afternoon, went to theatre. Whilst there, the surgical staff took a bone marrow biopsy, changed her gripper (has to be changed after a week), did an ultrasound and small biopsy of the lump in her neck.

They then did a bronchial lavage and scope. This means using a fiber optic bronchoscope to look into her lungs, and check for any irregularities. Saline is then flushed throughout the lungs and washed out and that liquid tested for a range of infections.

The after effects can be a high temperature (!), coughing, sore throat and difficulty breathing. Anna was in recovery for nearly an hour afterwards as she struggled to breathe easily and maintain enough oxygen in her blood. The medical team were concerned about her temperature not settling below 39 degrees but I did explain that in terms of her current condition that was considered to be in Anna’s lower range. Once back down on ward 2, she was seen by the registrar and the on call physiotherapist was called out for some chest physiotherapy. She was finding it very difficult to breathe easily.

Despite all that, she had a reasonably good night. Obviously both she and I are woken frequently through the night for her obs/antibiotics/infusions/…but she did go back off to sleep again.

The biggest improvement has been in her temperature. The last temperature over 40 degrees was 24 hours ago, and the last one over 39 degrees was 12 hours ago.

She has had 3 physiotherapy sessions today, working intensively on her chest to remove secretions (she is not enjoying that!), a session with the occupational therapist, visits from several doctors and consultants and a review of her input in a nutritional research project.

She is absolutely exhausted. However, she looks a lot better and is clear and articulate especially when telling the physiotherapists to either stop or go away.

The bone marrow biopsy shows no return of the leukaemia (thankfully), and is consistent with infection. Her blood counts are showing small signs of recovery (neutrophils have come up slightly from 0 to 0.06 – normal level should be 2.5 to 7.5).

The fluid from the lump on her neck showed no pus, just blood. Seems to be what the medical staff wanted.

The bronchial investigations suggest a possible fungal infection so her drug regime has been added to, although she was already on anti fungals.

Everyone who has seen Anna today has commented that she looks much better. She is now sleeping.

It looks like she might be improving. I’m hopeful that tomorrow will be a better day.

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Anna is still in hospital and will be for at least another week, unless there is a dramatic improvement. Peter and I alternate staying nights and weekend days, and I cover most of the week days. It is a constant challenge to look after Anna in hospital and Nathan at home, managed with a huge amount of help from lots of you…

Anna’s temperature continues to be extremely high, as you can see below in her temperature and heart rate charts for the past few days. The temperature is the top chart in the pictures and heart rate is the bottom one. Normal body temperature is around 37 degrees (you can see a black line for this on the chart) and anything above 38 degrees is fever or pyrexial. The black dot in the vertical axis of the temperature chart is 38.5 degrees.

You can see the dips on the chart when she is given paracetamol. Her temperature dips for several hours until it wears off, then goes straight back up again. A lot of her temperatures are recorded at 40.4 because that is the highest that the tempa dot strips go up to. It is probably higher than that. Her last temperature was 40.4 on the strips but 41.2 on the tempanic (ear) thermometer.

Her blood counts are very, very low. Haemoglobin is still around 70 so she has had another blood transfusion. Her platelets and neutrophils are almost zero, and white blood counts around 20.

The medical team are still working to find the cause of the infection but have also considered that the fever and accompanying shakes could be a side effect of one of her (many) drugs. The anti fungal drug she was taking, ambisome, can cause fever and shakes so that has been replaced by another antifungal. She is on several intravenous antibiotics, some specifically for respiratory infections and some more broad spectrum. She is also on drugs to maintain her potassium levels, which had been low, multi vitamin/minerals, and a range of others on demand to address either pain (codeine) or any side effects from the others (eg ondansetron for anti sickness).

She is still quite unwell but not causing the same kind of concern as last weekend. However, it is clearly not good for anyone to have such a high temperature for such a long time, especially a 4yr old girl.

As well as continuing to search for the source of infection, the medical team are now also trying to identify the anticipated progress of the infection. If there is no change, she will have another general anaesthetic on Wednesday and a bone marrow biopsy. The biopsy should show if her blood levels are due to improve or not. Of course, they will add in any other procedures while she is under a GA such as taking a sample of the fluid from the still unidentified lump in her neck and fitting her splints.

The splints are to avoid contracture in her feet. Because she is using her feet and legs so little, there is a very real danger that her ankle muscles will shorten and become resistant to any stretching. So she may regain strength sometime in the future but her feet wouldnt work. She has had splints cast, which she did not enjoy, and it would be easier just to put them on her while asleep.

Anna didn’t want any photos taken for the blog today (she really is feeling rubbish) so I’ve put some in from before her leukaemia diagnosis.

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Anna’s temperature is still consistently high. Since Saturday nights’ crisis, it hasn’t really settled at all. It keeps heading back up over 39, frequently hitting 39.9 and has just measured off the scale at 40.4. Paracetamol is given 4 hourly which reduces it but as soon as the 4 hrs is up, it shoots back up again.

When her temperature is high she vomits, coughs excessively and struggles to get comfortable. She is on ng feeds, 4 different antibiotics, and another blood transfusion is required as her haemoglobin has dropped from 90 to 70 to 50 in the last few days.

Hospital/NHS policy is not to do blood transfusions overnight. Mainly, I think, due to staffing levels. It is also not usual procedure to give bloods when the patient has a temperature in case of adverse reactions. However, the SHO is currently phoning our senior consultant at home to discuss this. I’m nowhere near as worried as I was on Saturday night -all her other obs are good, including blood pressure, heart rate, oxygen levels etc. it’s just this temperature which is such a problem. I suggested tepid sponging (thanks, mum) but the nurse suggested a one off dose of brufen instead.

Over the past week, Anna has had a CT scan, an MRI, lumbar puncture, 2 chest X-rays, one stomach ultrasound, visits from E,N&T consultant, neurology consultant and regular night visits from the overnight registrars. She has had a blood transfusion, platelet transfusion and is on ng feeds. She is having 4 different broad spectrum antibiotics to try and address any infection. Blood samples have been taken frequently and sent for virus and bacterial analysis.

Although she is still clearly ill, she is managing some smiles, which is wonderful. Clown stevie is one of her favourites.

He isn’t allowed in the room because of infection so he has to perform his clown antics and magic tricks through the window. She still loves it!!!

She is lying quiet and still just now, too hot to really sleep and occasionally calling out for either me to hold her hand or a drink (or both).

Hoping for a better day tomorrow. Good night from us. X

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Anna is in bed, comfortable and fairly settled. She is still waking for either a drink or to be sick but nothing out of the ordinary. Observations (obs) are back to 4 hourly. She seems to have come through this latest crisis.

After the terrifying events of Saturday night, she was unbelieveably clear and articulate with the neurology consultant on Sunday morning. He was expecting to see a confused and disorientated young girl, unable to recognise her own mother and not responding to external stimulation. Instead, Anna was grumpy, clearly not willing to speak to him and treating him with disdain when he asked her (apparently) stupid questions about the colour of her cup. He must have wondered why he was called out! Although her temperature was still high, all other clinical signs were good and so it was decided to wait until today for her MRI and lumbar puncture.

She had to fast from 3am this morning and was finally taken for her MRI at 12.30 pm. Since she was going under a general anaesthetic, we had a list of other procedures added in, just because it is easier to get them done while she is asleep – changing the gripper in her port a cath (involves ‘plugging’ a needle into the disc under her skin), removing and replacing her ng tube in her nostril and doing a lumbar puncture. She was sleepy but fine afterwards, wanting crisps and milk.

Bloods have been taken, samples tested for everything, she has been examined and discussed but nothing is showing up as the cause of this episode. The MRI scan show nothing unusual. The most likely cause seems to be a viral infection but it may well be that we don’t ever find out what really happened.

All the weekday staff were coming back in this morning and hearing about it so we had lots of people asking how we were. It seems almost unreal that she can have been so unwell and yet recovered so quickly.

We have no idea when Anna might be discharged. Its only possible to manage being in here and having some kind of normal(!) family life because of all your help – looking after Nathan when I’m in the hospital, looking after Anna when I need to be with Nathan, and constant messages of support. Thank you to everyone helping with this – you are all doing an amazing job.

We are also still in partial isolation because of her rsv. But we are through the worst of it. All prayers were answered. We are truly grateful.

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She was admitted last week with rsv, a relatively common but unpleasant cough and cold virus which can have serious symptoms even in otherwise healthy children. Anna’s symptoms are at the severe end of the scale since being admitted last Saturday.

However, her condition deteriorated yesterday afternoon and overnight.

Yesterday, she had a liquid feed going in to her nose through the ng tube in her nose as she was eating almost nothing. It was making her sick so she was having anti sickness medicine as well.

She had blood and electrolate fluids going intravenously through her port-a-cath as her haemoglobin counts dropped down to 71 (they transfuse below 80) and her fluid intake was extremely low.

She had a monitor strapped to her toe to measure her oxygen levels and, because the oxygen is low, she had small tubes up her nose giving her additional oxygen.

It’s not usual to see her with so many tubes and wires.

As the afternoon went on, it became impossible to settle her. She started behaving in a unusual manner, repeating things over and over again, getting her words confused and unable to sleep.

By early evening, it was clear that Anna was very disoriented and confused so the registrar was called. Once he arrived and examined Anna, the consultant on call was contacted at home and asked to come in. By the time she arrived late evening, Anna’s condition had worsened. The radiographer on call was brought in from home for Anna to have a CT scan and her chest was x rayed. Various discussions took place between oncology, neurology and other consultants and it was agreed that the CT scan showed nothing critical (such as a bleed on the brain) and that she would have an MRI on Monday, and possibly a lumbar puncture.

The consultant discussed moving Anna up to the high dependency unit but instead, around midnight, she was moved into a cubicle next to the nurses station here on ward 2, and put on half hourly observations.

The nurses showed me how to use the emergency button in the cubicle. They’ve never done that before.

The evening shift registrars came down to assess Anna around 1am and around then she really started to worry us all. She kept asking for me over and over again although I was right in front of her. She didn’t seem to be seeing anything, although her eyes are working.

The medical staff don’t really know what the problem is and are trying to eliminate possible causes. She is on 3 different intravenous antibiotics to try and cover as many infections as possible. She has an oxygen mask next to her face to maintain oxygen levels. The nursing staff, registrars, consultant on call and HDU were all on alert, waiting to see what happened through the night. There was a ‘low threshold’ for moving her to HDU.

She finally fell asleep at around 2.00am, with me on the chair next to her. I was scared to sleep in case her condition worsened but eventually dozed on her bed. Both she and I were woken at every set of obs (blood pressure, temperature and eye response checked). And at various points in the night she has slept on my lap. Emotionally and physically, I’m exhausted. She will probably go for an MRI and lumbar puncture today, rather than waiting for Monday.

This morning, she is currently fast asleep, her temperature is back down and she behaved ‘appropriately’ (medical term!) when she woke and asked for a drink. She is more comfortable and although there is still clearly a cause for concern, I’m not seeing the same urgency in the medical staff response. Thank goodness. Investigations will continue and I’ll update you once we know more.

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Temperature 38.9…which means we are back in hospital. Anna is not feeling good and didn’t want to smile for a photo.

Anna’s cough and cold worsened overnight, she was sick and her temperature spiked over 38 degrees.

The routine is then:

We phone ward 2 (leukaemia/oncology ward where Anna is usually treated)
They tell us to come straight through A&E
In A&E Anna is assessed – temperature, blood reassure and respiratory rate
If available, one of the nurses from ward 2 comes down to A&E so Anna knows them (although the A&E nurses tend to know us by now!)
Her gripper is put in (‘plugged’ in to the port underneath her skin) using freeze spray to numb the pain of the needle
Blood samples are taken through the port and an initial dose of intravenous antibiotics are given
Calpol is given orally to reduce temperature
Mouth and throat swabs are taken
Then we are moved up to ward 2 when a bed or cubicle is available and more antibiotics are given through a drip.

There are 6 cubicles on ward 2. We’ve stayed in most of them, except for cubicle 6 which is the 5* room as it has both a window and a toilet. Rooms 1-4 have a window looking out on to the car park but no toilet. The nearest toilet for parent is out of the ward, which is more than a bit inconvenient in the night. I do not like wandering around the hospital at 3 in the morning in my pyjamas when no one else seems to be around. Room 5 has a toilet but no external window. I think, weighing it all up, I prefer a toilet to a window for a short stay!

A fold down bed fits in each room for parents to sleep overnight.

This used to be the only ward in the hospital where parents were allowed into the kitchen. Many of the children here are long stay (like we’ve been), or have particular food requirements when on steroids. It just made sense to let us do their food. However, since a parent accidentally left a plastic lid on a hot hob ring, causing fire and evacuation, parents are no longer allowed in the (newlyfitted) kitchen. We can leave food in the fridge but have to ask for it. We can’t prepare food for ourselves or Anna and have to go either elsewhere in the hospital or across the road to the CLIC house. That is why I’ll be wandering the corridors of this hospital later with a hot prawn makhani and microwave heated naan bread.

And we are not allowed any tea or coffee on the ward at all. It’s all a bit grim. Hopefully we will be out early next week!